Black Dog 16

Wyllow3 great news about barium results. Yes, diet is the way to go, I think.
Doodle what a thoughtful friend to have.
Glad the dizziness didn't return HVDY.
Enjoy your family visit Scaredycat I hope the AF doesn't spoil it.
Candy hope today has been easier for you.
Hello to all others.
Wishing you a peaceful evening and hope you sleep well.

Have had a better day. Went to art first time in 3 weeks. Pain eased enough to make it, enjoyed painting and coffee break.
So good to get out and have company.
My son is coming in August.

Doodle I'm glad you had good time with your friend. You need that with everything you and DH have been facing these mths. She sounds a real tonic.
I must put right my clumsy wording in previous message if it's come across that I think neurogenic pain is 'in the mind' which of course I know it's not at all. That would be ridiculous. I've looked back and it wasnt what I meant to say. Many people with undiagnosed pain are put under the Chronic Pelvic Pain label and I dont want to be stranded with that label and stop being investigated. I'm sorry if it came over that way. Of course Neurogenic pain isnt 'all in our minds' as I know too well as Ive long thought that mine might be. Anyway sorry if it's all got mixed up.
Oh yes, Doodle the drink. Strangely, no adverse affects at all as I slept until 6.Not pushing it though so back to back on IC diet.

HVDY Glad the dizziness didnt return. That aqua aerobics sounds great and you must have made some friends there by now too. I hope you can manage without speaking to the Rheumatologist HVDY. Ive had that happen to when someone says they'll call and don't. I think if you still have some worrying side affects you could try again later to contact someone about it, if they persist.

Love to all and wising everyone a peaceful night. X

Nadateturbe Just seen your post- Im so glad you got to your art class/group after so long. Great news about your son coming in August too.

Oh blast! dont think that previous message worded right either. Meant to say 'have long thought mine (pain)
could be Neurogenic, not in my mind.
I' m making so many mistakes.

Sweetpeasue you didn't say anything wrong. We all know people are often made to feel that it's in their mind by the use of terms like neuro..... And chronic doesn't sound much better. I was just trying to reassure you. And I'm not sure I've explained that right!
I think sometimes it's difficult to explain what we mean.
Please don't worry, take some painkillers and go to bed and try to get some sleep. I'm sure you and your husband are tired after last night.

You have all been through so much will physical and mental health problems and also worry about family members. I hesitate to write about what happened yesterday.

I got an UTI on Friday first one in 2 years after having a long battle with them which ended up with me having from September 2020 to May 2021 having 16 courses of antibiotics for UTIs and kidney infections. After see the urologists he reckoned I had an infection which took a long course of antibiotics to get rid of. Ultrasound should my bladder and kidneys where fine.

Can't remember if I said after my diagnosis finally last year I applied for PIP because CAB and Age UK refused to help me with the forms my daughter filled them in . And after phone assessment was given 0 for everything. Which upset me as I have as of this year been fighting for 35 years for disability benefits. So I never told my daughter I wasn't giving up fighting for it. MRN turned down . I found out about the Brain Charity and a lovely lady is helping me and got me a solicitor . Been waiting since September for a tribunal date. Since August last year my mobility has gotten worse. Thanks to my neurologist putting me on Clonazepam I haven't had any limb jerks or seizures for 3 years after having the limb jerks which where violent and very painful and 4 months of full seizures. 3 months ago had to double my dosage due to my legs feeling like they had planks attached to them and couldn't bend my knees walking.

Mine while because my savings have gotten so low I applied for universal credit and after seeing a lovely woman at the job centre was awarded it. Because of my mobility she said in future all appointments would be on the phone . I have now had the health forms which who I deal with at the Brain Charity is going to help me fill in.

Yesterday started off fine baked for my craft group and did what I could in the garden. Thanks to my late husband I have learnt to do things my way . I have felt bad about keeping from my daughter about the PIP tribunal as she got upset when she I was turned down. Anyway yesterday my solicitor asked if she could talk to my daughter and who I deal with at the Brain Charity. So I text my daughter and had to admit about the PIP . The tears started and then didn't hear from my daughter for 5 hours . I thought I had lost her. As some know my son decided in 2020 to give me the boot as his mom via email and follow up letter 3 months later. I will never understand why. Since then contacted him 3 times once after I sold my husband's number plate last year. He left it to the children in his will. He sent me his bank details and out thank you that upset me after all the vile things he said. When I had my diagnosis and sent him a copy of my neurologists report heard nothing . Then I decided to text him one final time about 6 weeks ago he sent back a vile text . So I am now done. I deleted all his texts he has ever sent me . And am done . The only person hurting is me so no more I have given up any hope of hearing from him again. I was a very hard decision to make but I had to for my own peace of mind.

Yesterday because I didn't hear back from my daughter I thought I had lost her as well but though my own stupidity. I couldn't eat and cried that much my eyes got very sore. And have never felt so alone . I have been lonely but only for my husband never because I live alone. Both children left home in 2006 I wanted them to live their own lives . My daughter was in her final year at uni when her dad died. And came home to help her brother through A levels. She is 4 years older. I couldn't move closer to them because I had both parents and mother in law to look after. I wasn't able to move closer to them until 2019. So I had a lot of years where I had to do everything on my own. That included keeping things from them which was my way of protecting them. Did it from when my health got worse in 1988. My husband didn't want them at the time and made me promise they would never know just how bad a time he had with his cancer. Like I hid from then how bad things got for me liking after my parents and mother in law. Especially how bad moms dementia got and the violence the last 4 months of her life. She lived with me the last 18 months of her life. Mom had died long before her body did. But I couldn't put her into a home.

So since my husband's death in 2004 I have kept things to myself. I have never wanted to be a burden to the children. Because of my son my daughter has helped me on her own .

Anyway back to tomorrow. I got so upset about thinking I had driven her away I have never felt so alone and frightened. I have always coped with what life has thrown at me but yesterday I couldn't cope. Besides HPX I have PAF and because of being so upset set both things into overdrive. So my balance and co ordination was off and my heart was pounding and missing more heart beats than normal. Crying made it worse and I was shouting at my husband for dieing .

My daughter text then we talked and she's right I have got to stop hiding things from her and said why didn't I think she would understand and help in anyway she could. And I should have told her which I know I should. Plus she said I need to talk to someone about how I am feeling. Since my diagnosis I have been learning about HPX and I can see over the years why my body has done and is doing the things that it does. But that's thanks to the HPX Facebook group who are very open as we are all in the same boat and learning from eachother because it's so rare and so little written about it neurologists have never heard of it. My neurologists has never had a patient with it. People can't get travel insurance for holidays abroad because it's not known about . Even at the Brain Charity they had never heard of and they have been running 30 years.

Posted it incase I lost it. She said I will help anyway I can but you need to talk to someone. I have never had depression and only reason I went to bereavement group was because my children wanted me to after their dad didn't. It was useless the woman was married and had done a 12 week course. I was 45 nearest to my age was a man aged 68 all the women where in there 70-80's. Luckily the children asked if it helped only did I have a good meeting. They where nice people but no one understood. Some here may have been widowed young but the only thing I was allowed was £2,000 from the government towards funeral costs but gave it to the funeral as we had already set aside the funeral money and when my son went to uni didn't have to pay tuition fees. People expected to find a new husband but he was and is my one and only. And half of me died the moment he took his last breath after telling him to stop fighting he couldn't breath even in full oxygen so I told him enough and we would be ok. He died few minutes later at home with me and the children.

So I ramble on and things get mixed up. So I got in touch with the Brain Charity they have a counselling service there is a list but know on it I can't afford to pay for counselling. I won't go on antidepressants. On enough tablets as it is. But my daughter's right I need to talk to someone and have done for years. But always fought against it after my experience before plus I never had time for me . Mom was the last to die in 2017 . I wasn't happy where I lived and I wasn't living I just existed . Having jaundice that year due to 2 tablets I had been on since 1992. And being serious ill for 5 months then to find out I could have died as my bilirubin levels where that high normally peopled died. My gastrologist told me that when I was discharged from his care I am very lucky I have no lasting liver damage.

Since having the children ,my health getting worse looking after everyone else I never put myself first. Having jaundice was my wake up call my life had to change . Only 3 things I wanted move house ,lose weight and get fit.

I did all my own packing . My house sake feel though twice that's how I found GN because I didn't want to children to know how upset I was. Luckily the executor's of the will kept the bungalow I wanted. So instead of moving here in September 2018 got here August 2919. I have lost 7st since 2017 and attend sit fit classes before and after my move. I know longer exist but since moving live my life to the full.

I have always coped with life and have been in pain with my legs all my life and fell a lot. But moving not only gave me a life but having a very good GP practice who sent me to see my neurologist and cardiologist. And found out besides being born with hereditary Hyperekplexia gene mutation SLC6A5 type 3 I was also born with a hole in my heart. If I hadn't of moved I still wouldn't know what was wrong with me as my old neurologist never put me on Clonazepam or had genetic blood tests done also my old GP diagnosis me LVH and never sent me to a cardiologist.

Yesterday I have never felt so upset and unable to cope in my life. Even after my husband died I just got on with things. He made me promise a lot of things he was wise and knew what I needed to carry in without him . The main was was to live the best life I can and couldn't do that until my move.

Yesterday knocked me for six and realised I need help and I feel a loser that I couldn't cope. I never want to go through that again that feeling of helpless frightened me and I don't frightened easily. I have always coped and yesterday I couldn't . I felt a failure a foreign feeling for me.

Sorry to pour it all out as you all have enough to cope with but I need someone to confide in and picked you all . Sorry for any spelling mistakes and any jumble but can't read what I have written our I would start crying again and my eyes are still sore from yesterday.

I read BD everyday and don't know how you all cope but you do . I do feel better writing this . I am not a pity me person and hope this hasn't come across as such. I just needed someone who would understand. It's taken me 2 hours to write this hence the long ramble. But I hope I didn't do the wrong thing by burdening you when you all have so much to cope with yourselves.

Better shut up now.

Hi Whiff you did the right thing to share. Let it all out.

All the time I was reading your story I was hoping that DD would respond and I'm so glad that she did. And not only did she get back to you - but she did understand. That's enormous and I'm glad to read it.
Also glad you have a decent GP.

Do you feel your DD is right about some counselling? If so your GP can refer you because even tho you don't want anti-d's you could be offered a course of CBT counselling. (I wasn't clear if the list you are on via the charity for counselling is free or not). or you can refer yourself for "talking therpy" to the NHS - there is a guide here but ondt know how well it works:
www.nhs.uk/service-search/mental-health/find-an-NHS-talking-therapies-service/

And its good to get a balance to what we share with our Adult Children and a counsellor, you do right there.

I went to bed at 8.30 last night so tired and woke at 7 and still worn-out, but not surprised after the week past. I had to go out last night for food, not a brill idea but the cupboard was bare, but today is the psychologist at 10.30 by Zoom.

Good morning dear friends.
Sorry I won’t do individual replies but have just read all your posts. Just need to send loving thoughts to you all. So much you are all dealing with - hope today will be better for everyone.
Staying in peoples houses is difficult for me but we are here!!
Much lovexxx

Wyllow thank you it means the world than you understand and hopefully everyone else will too. I contacted the Brain Charity as they do counselling. My daughter is right I need someone to talk to and be open and honest and stop protecting her . I feel safe at the Brain Charity as I have a good relationship with a wonderful woman on meeting me after months of phone calls and emails met me in person on their events day and she hugged me straight off. It's free at the Brain Charity but on the waiting list now and had to write about how was feeling as I was feeling very low it poured out. There is paid counselling but it's £65 per hour I can't afford that. I feel lighter
admitting I need help.

Hope you zoom goes well today. Have my craft group this afternoon so will be with friends that understand and some of them have had and are having counselling.

I thought I was coping so came as an awful shock I am not. I will look at that guide thank you 🌹

Whiff I'm so sorry that you're in so much pain and anguish.
I can't reply fully right now as Ive an early bowel physio appt but I can see how upset you are.
I think you've been holding a lot in for a long time and after the estrangement from your son you must have felt such a fear you would lose your daughter too- which I'm sure will never happen as she loves you so much and needs you in her life just as much as you need her in yours. I think you are still suffering from the 'loss' of your son too and as you say, will never get over the loss of your dear husband.
I really think the counselling can help you to relieve yourself of so much pent up feelings. I hope you can get some soon.
Meanwhile, I know you have made some good friends and I hope you can confide a little of how you are feeling to someone special.
Please be very kind to yourself today and sending a big hug. x

Morning Sweetpeasue all the best with the physio.

I missed up tread that you've made it to the group Nadateturbe and felt a bit better. Very pleased to hear of the good day.

Scaredycat well done you for getting away and hope it goes as well as it can.

Whiff may the list not be too long for waiting with the charity, that's likely to be the best space.

ThanksNadateturbe No worries. Hope you are ok today and no after affects from attending your art yesterday.
Morning Wyllow Just in waiting room. Hope youre ok today.

I had a good sesh with my psychologist. Among smaller things, we looked at my pattern of rushing into "magic solutions" like for example going up to live up near family would "make things alright" and making myself ill in that rushing and hoping process. always believing that each time if I don't make the magic solution work then there is only despair instead. (have done different versions of this all my life, be it with men or with moving houses or with jobs or with hasty made over intense friendships).
She did of course ask me if deciding to move from here was one of those magic solutions but we went through it - as well as the practicalities well discussed here as in less to cope with, I have often been unhappy here and it's had nothing to do with Ex.
I asked the after the discussion did she think I was thinking magically and she said no she had no doubts but that she would challenge if she thought I was going down a magical solve it all road including with any men I might encounter. (since in the past that been one of my "rushing into's" and look at the last one...)

I had thought I'd go out to the gym after sesh but frankly was exhausted and went to bed and slept again (last night was from 8.30 till 7, this morning in between my posts here, and now 2 hours - clear utterly worn to a shred also relief of tensions before I can do this.

I had a reply from my decorator. She couldn't offer until the 13th July, but I said yes.

Forcing myself into it in 4 days when I'm like this thank goodness I stopped myself in my tracks without damage. (Thats another story/pattern of mine - rushing into stuff then having to pull out and letting people down sometimes cause hurt or even rejection).

Whiff You've had such a lot of losses in your life
- bereavement is something I suppose we all experience, in some way or another, but being estranged from your son must be particularly difficult to bear, and I can't begin to imagine how upsetting that must be. The NHS has counselling, and it is possible to self- refer (there's usually a waiting list), on the NHS website. It might help you.

SweetpeaSue How was the bowel physio?
Wyllow You obviously needed all that sleep. Delaying the decorating sounds sensible.

How has everyone else been? I went to the day centre, had a good day - some bloke (72) who sits near me kept looking down my dress , so perhaps I won't wear that particular dress again - it isn't low, but I AM very busty, and he IS a cheeky git. Hope everyone has been ok x

That may not stop him looking HVDY I'm spared that particular body part staring.

Wyllow I think he's "one of those" men. He asked me who I was meeting on my way home because I'd put some lipgloss on (when I went to the loo). His wife is very nice but very plain, whereas I wear "all the face". I might start sitting somewhere else at the day centre

Wyllow That sounds like a v exhausting counselling session. The psychologist certainly seems to be thorough in the analysis of your actions/motives ect. and you both go through it together. Glad you got the decorating postponed. Sometimes we can only cope with so much. I find it hard to make decisions, even to have a bath, let alone important medical ones, I just want to shut down.
HVDY Men eh!
The physio was mainly my telling her that the pelvic floor excercises brought on pain do Ive to do 'little' half clenches, as pelvic floor could be too tight. She's left futher appts open (if I feel I need to go again) as I said my bowel problems aren't too much of an issue now. Since I left Ive had griping bowel pain and been to bathroom 5timrs with diarrhea. Wasnt complete waste as much of appt was able to help her with her neice who she said just diagnosed with IC and she wanted to discuss that.
Had hell of a day.
Urologist said he just needed GPs agreement to do operation at that (private)hospital so DH told GP yesterday morning when he rang about me. Hed sent for letter from Urologist. I was sent text from surgery saying Id to book online for my local hospital. Rang sec of surgery, explained consultant was going to do it at other hospital. Another text to book. Booked hospital saw Urologist in. Get info nack saying Id booked a consultation. Apparently need another NHS consultation and not till August. But Ive already had a consultation on Tuesday. I'm stressed to hell. I'm only doing what Ive been told to do . I don't understand all these processes.

I just want to hibernate and everything go away. I know I need to get 'big girl' pants on but frankly they feel too big!

I think I'd be a bit direct just once - like after that remark about who you are meeting - but ultra polite - to nip in bud. Yes move if you are equally happy elsewhere but don't let him hound you out...

,Whiff I hope you're feeling a little better. Its awful to feel so upset and alone. As Wyllow said, sounds as if your best bet for counselling may be through that charity. HVDY has explained another option too though you'd need to see how long you would have to wait. So sorry youre having all this upset. x

Heck Sweetpeasue that is confusing enough for a PHD student never mind someone coping with what you do.

Personally I'd ring the GP tomorrow and ask for clarity. Its possible they have confused things as well as it can be complex between NHS and Private. Your physio sounds like a helpful person. I'd follow her advice re the pelvic floor clenches given your bladder related stuff. And as someone who does clenches and has bowel stuff its good advice anyway to "go gentle".

For me, how my bowel behaves is often related to stress. I say often not always, and am not saying my issues same as yours but as regards exercise and bowels I would go back on that to physio. I do gentle twists and gentle pushing tum out and breathing deeply to try and relax bowel like everywhere else- in just trying to get stuff down there a bit flexible - but ask.

There's a writer called Doris Lessing whose autobiography contains an unforgettable passage for me.
At far too young an age she was expected to hold things together and she wrote (I paraphrase slightly)

"everything was too high, too far, too confusing, too grown up, too hard - but I had to do it"

I hope you don't mind my posting here but I saw on the support for estrangement thread that my dear friend Whiff had posted here and not knowing the details, came to see what had happened.

I'm so sorry Whiff that you went through that and I do understand. Regardless of how well we get on with the child/children who haven't estranged us; regardless of the strength of the relationship we have with them, when you've been estranged you live with the fear that you'll be estranged again.

You've been through so much, and continue to do so. Struggling to cope and knowing that you need help isn't a sign of weakness or failure, it's a sign of strength.

You give so much to so many. I for one will be forever thankful for your care, support and friendship and it's good to see the support and friendship you've found here x

Wyllow Thanks. I think I know the excercise you mean. Not sure about twists but physio did say about relaxation breathing excercise and breathing 'with tummy'. Also tensing and relaxing different parts of body.
You're probably right about stress causing bowel to react, taking into account yesterday.
I'd vaguely heard ofDoris Lessing as an author, but looking her up she was a v courageous woman and activist for socialism.
What a good quote, thanks. I still want to hide behind the couch though! 🥺 I'm no Doris Lessing that's for sure. But yes- 'you have to do it.

Smileless2012 What lovely words for Whiff. I' m sure she will read and find comfort from you her friend.

SweetpeaSue What a palaver! Things should be easier to arrange than that. I hope your diarrhoea has now settled down. Not nice.

Wyllow That bloke also said something to a lady there, who is very thin (size 6) and who is undergoing tests to establish why she'd lost lots of weight - she was eating one biscuit this afternoon, and he said: "You've only just had your lunch". He's an idiot.

I've just scoffed a huge piece of cake (why did I buy it??) and a chocolate mousse. Hope all BDers have a relaxing evening x

Hmmm. Quite a bit of control going on there HVDY. I'd honestly try and nip in bud with pointed comment when he did fait being overheard. As in, don't make remarks about women and personal matters please it upsets people. Or ask organiser to have discreet word. Unless of course he's got onset of dementia and loosened tongue.